Dave's ileostomy, a Crohn-icle

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Monday, 22 April 2013

It has been a few weeks since my last post and this is partly laziness, but mostly since I have found myself concentrating on getting myself "back on the horse", as they say. I'm now roughly two months on from surgery and I can now honestly say that I am feeling the benefits. Every day I am now thinking to myself "wow, all of that was actually worth it". I don't have any symptoms of pain in my stomach like I used to get several times a day, I have energy and drive and, most significantly, I don't get mad dashes to the toilet like I did before - doing a poo is altogether more controlled and civilised, not to mention blood free! (sorry I hope you are not reading this over breakfast...) I'd now like to say a little about what I have gotten up to over the last few weeks.

Experimentation with ostomy products

I have read that in days gone by the products available to ostomates were very limited and only partially effective; having a stoma was really very difficult to manage. Thankfully nowadays there is a vast range of available products and my main challenge has been in finding a combination that suits me. Ultimately the goals are fairly simple; the ostomy bag should stick well, be comfortable and the seal should last a long time (a few days is good) before needing replaced. This seal is the all important part to avoid leakage of the contents onto your clothes and each manufacturers seals are slightly different; it is a case of trying every one to see what sticks best with the least irritation to the skin around your stoma.

Then there is the choice between a one-piece and a two-piece system. In a one-piece system the sticky part is attached to the colostomy bag permanently meaning that whenever you change the bag, you also change the seal. This has the benefit that you are inspecting the stoma and surrounding skin more regularly which may help to identify any problems with irritation excoriation etc. The frequency of seal changes may however be detrimental if the act of peeling it off is a source of irritation. In a two-piece system the seal is separately attached to the body first, then the bag is attached to this by way of a mechanical connection (some are a bit like a Tupperware box lid, others have an adhesive ring). The benefit of this system comes if you can get the seal to last a while, therefore you can change the bag without peeling back the seal. For me the two-piece system has been the route to pursue and I have indeed found something I like where the seal lasts up to 5 days, whilst I change the bag every day.

At this point I must add a section on the economics of all of this. In the UK we very lucky to have the National Health Service and financing the cost of ostomy supplies is something us ostomates need not worry about. Almost all commercially available products are offered to the patient free of charge via prescription by a GP. Furthermore there are several companies which offer a service to manage the prescription requests and deliver the products to your home, making it even more simple to get supplies. This is truly an amazing service and I cannot fault the NHS one bit here. Unfortunately the same service is generally not available to overseas ostomates and it is common to find that either the individual (or their health insurance policy) bears the financial cost, which will be in the thousands of £GBP per year.

Activities

In my last post I explained how my physical strength had diminished post surgery; I found it difficult to carry out even menial tasks. Things have changed a lot now (for the better) and despite being told not to push my abdominal muscles too hard I have been able to go walking, swimming, play golf and do some gardening. I even went for a sauna a week or two back which was absolutely fine. I'm hoping to go cycling in the next couple of weeks because my tail end scar has healed really well. I returned to driving about 5 weeks after surgery (the main consideration is whether or not you can carry out an emergency stop safely).

This is not to say that I am back to full strength yet (as was evident as I wheezed my way up a local hill last night). However to be getting back to my normal physical activities, with progress in my physical ability increasing every week, I can say without doubt that the surgery has been well worth it for me. In this respect managing Alf (my stoma) is actually a pleasure. It sounds really daft, but I see him as a little being who has been placed on my body to stop the pain and discomfort of the last seven years (stupid I know, but maybe its just my way of rationalising it).

Little treats

I must confess that I have used my recovery time to indulge myself with a few treats. Firstly my wife and I finally got around to getting a little cat (something we've been planning for years). Her name is Islay (silent 'y') and she is just a little bundle of joy to us (most of the time). There is a caption competition for the picture below so please leave a comment!

Secondly I treated myself to a new digital camera (for the "photography-philes" it is a Canon 60D digital SLR). I've always been keen on photography but never taken the plunge into non-point-and-shoot photography.

Lastly, my wife and I celebrated our 3rd wedding Anniversary this weekend by returning to the hotel at which we tied the knot for a night. We also visited the lovely town of St Andrews and my wife was able to convince me that I should take photographs of the ruined cathedral rather than of The Old Course. I also think I (only just) managed not to make her feel like a photography widow for the weekend.

Saturday, 16 March 2013

It's now 10 days since I waddled out of Ward 24 into my father-in-law's car and home to my lovely wife and I can honestly say that I have made significant, if steady, progress in my recovery. Today I'd like to share a few of my feelings and experiences since returning home.

Recovery - pains and emotions

Firstly I'd say I grossly underestimated the impact this surgery would have on my body. Despite my best efforts to prepare, the physical trauma has been far worse than I thought it would be. Although I have a chequered medical history I generally think of myself as being quite fit and otherwise healthy; I had it in my head that I'd be able to bounce back quickly. The weakness associated with the loss of muscle mass is the thing that is most difficult for me to deal with - I have very little strength and stamina to carry out daily tasks, let alone to do any extra exercise (I really want to golf and swim sometime soon). However, day-by-day things improve a little. Perhaps I won't take the afternoon nap which seems to have become necessary since the surgery, or maybe I'll walk a little further than I did yesterday. The best adjective I can think of to describe my recovery is 'incremental'. If you are going to be undergoing this type of surgery, I'd highly recommend you prepare yourself for a slow (but steady) recovery. And don't try to push yourself too hard, the frustration has to be secondary in your mind behind allowing yourself time to heal.

Regarding my aches and pains: when I left hospital I was scared to cough or sneeze due to the shooting pains it would send through my abdominal wound. My wife found it quite funny that I had developed a technique by where if I felt a tickle at the back of my throat I'd make a noise that she described as a "distressed sea-lion". I found that rasping my vocal chords could often negate the necessity to cough thus avoiding the stabbing pain. Sneezing, however, is a different matter; if you need to sneeze you need to sneeze and I can tell you it hurts! One day though, about 17 or 18 days after surgery, I realised that when I sneezed there was no longer a stabbing pain and it is now just a bit of muscular abdominal discomfort which lasts a few seconds. Regarding my "tail-end" scar it is healing well all things considered. I can now sit comfortably, even on a hard wooden stool for reasonable lengths of time. It feels weird and a little tender when washing but hopefully in another few weeks it will be healed to an extent where I might even be able to sit on a bike saddle.

Emotionally I have yet to get to a place where I feel it has all been worth it and I'm hoping this time will come soon. This said, yesterday I did notice myself thinking that I no longer have to rush to the toilet like I did for years before the surgery.

Practicalities and mishaps...

This section will probably interest fellow ostomates (or ostomates-to-be) more than the "regular" readers!

I have been pleased that my stoma output (I find it funny that 'poo' becomes 'output' once you have a stoma!) has been really quite thick. I spoke to the stoma nurse and she said that this is a really promising sign that things are working as they should.

This said, I have had a few mishaps including a bag leak in the middle of the night which coincided with a boiler breakdown meaning no hot water to clean up the resulting mess...it was one of those Murphy's law moments! However my wife helped me through and we eventually got the boiler fixed after 36 hours, by which time the house was freezing (it also coincided with one of the coldest days of the year so far...). The reason for the leak was due to liquid output (diarrhoea) filling the bag to bursting point while I slept. I'm not sure there would be much I could do about this if it happened again, apart from perhaps a larger bag to wear at night. I had indulged myself with a chinese meal the night before, but I could not say whether or not this was the cause.

The aforementioned calamity aside, I have found myself settling down into my new 'normal' lifestyle. Obviously I have a fair way to go since I'm not back to work yet and I want to be doing more activities. But on a practical level, managing Alf is becoming less of a daunting lifestyle change and more of something I 'just do'.

Wednesday, 6 March 2013

Well just a very short post to say that, finally, I am to get back home today. I am looking forward to moping around the house rather than Ward 24. Every day I feel a little stronger and my aches and pains a little easier.

Many thanks for all the kind messages of support, it really has been touching that so many people have been following my progress. I will keep posting with regular updates in the next chapter of my recovery.

Monday, 4 March 2013

Over the weekend I couldn't help but question whether all of this has been worth it, and this has been pretty difficult to deal with emotionally. I have yet to get to the stage where I'm reaping the benefits, but that time will come, I just need to have patience. Yesterday and today have brought great strides forward, with my pain levels minimal and my appetite coming back. I feel like, little-by-little, I'm regaining some physical strength. I'm off the strong pain killers, and my staples should be removed from my abdominal wound tomorrow. I was shocked, though, when I asked to weigh myself and came in at a measly 72kg (I was 81kg on admission to hospital). For the imperial minded this means I have lost about 1st 6lbs in 13 days. About 4lbs of this was physically removed during the surgery.

But there's light at the end of the tunnel now. Even murmurings from most doctors and senior nurses that I'll probably be home soon. I need to speak to my consultant who has not yet been round today. I feel like I'm nearly ready to be recovering at home, so here's hoping because the hospital food, for want of a sophisticated description, is shit!

Oh, if you're wondering why there is a picture of Alf, the loveable 80s sitcom character I remember from my early childhood, it's because that's the name my wife and I came up with for my Stoma. And they kind of look alike in a weird sort of a way.

Saturday, 2 March 2013

I'd say the last couple of days have had the highest highs and the lowest lows of the journey so far. I am writing this at about 6am on Sat having had a very broken sleep caused by feelings of extreme nausea. Eventually I vomited at around 4am bringing up 550ml of liquid (they measure it :-)). Prior to this I had had a decent day, but my Stoma had not produced very much for about 36hrs. It seems that yesterday my gut decided to shut down and everything I have eaten and drunk backed up with nowhere else to go but up! The very worst part of this was the pain in my abdominal wound as the muscles spasmed during the vomiting reflex; I can categorically say this is the sorest pain I have ever experienced, it felt my wound was being ripped open.

But it has not all been bad in the last 3 days; Thursday was an extremely good day for me. I had lots of energy, the Stoma was working well and my fluid balance was recorded to be perfect (I.e. intake=output). This was easily my best day since coming in to hospital.

At some point ill get some pictures of the Stoma up on the blog, but I'll wait until I'm a little less spaced out on oxycodone.

Thursday, 28 February 2013

I'm feeling very well this morning, the best morning since I was admitted 8 days ago. I have energy and a spring in my step; I am certain things are going the right way now.

Over the last few days I've been reliant on several pain killers, and my "on-demand" pump has been tweaked so that I can generally manage the pain myself. With medications in mind and for a laugh, I've decided to provide you with the following list, which names all drugs I have been given over the last 8 days. Here we go (there may be some spelling errors):

Tuesday, 26 February 2013

...but I think I'm now on the correct road to recovery. Yesterday was a long day with quite a few ups and downs as the digestive system was waking up after the emergency surgery. The good thing is that I have now gotten pain control which seems to work "on -tap" for the associated colic pains when they do come.

I showered myself and changed the ostomy bag this morning and I'm feeling refreshed and relaxed.

The progress is going to be steady but hopefully no major setbacks from now on, and my new Stoma is nice and pink, and slightly reduced in size from yesterday. All good signs.

My abdominal scar is a beauty! Pic attached... It is very uncomfortable, but not a type of pain which is worrying me.

Many thanks again to my family and friends for all the support over the last few days.